280 posts in this topic

When I took my youngest son to a pediatric gastro who specializes in celiac disease, I expected a level of care and concern that I REALLY did not get. I was referred to him by my regular doc who, after positive blood work and positive genetic tests, thought a visit to him could be helpful. I go in with my then 4 year old son and was lectured for over TWO HOURS (no joke) about how I "want my son to have celiac disease" and "how impossible the gluten-free diet is to follow. No one is ever, really truly gluten-free". He ran all the tests again because he "didn't trust the lab my regular doc used" and said that my little guy "probably didn't have celiac disease".

I went home from this appointment with a mix of emotions, doubting myself...did I really want him to have celiac disease? If so, why was I crying about it every night after everyone went to sleep? Is it possible that this is all in my head? Does he really not have celiac disease? I spent the next two weeks waiting for the new results and actually got my hopes up, thinking that maybe he really didn't have it. After all, this doc has 35 years of experience in this field (as he told me over and over and over and over) he certainly must know more than I do!

When the results came back he did everything short of apologizing. Saying that he "rarely sees true cases of celiac disease" and that my son "clearly has it". Of course he still wanted to do a biopsy. I, with the backing up of my regular doc, refused. My regular doc agreed with me that doing a trial of eating gluten before the biopsy could kill my son. Absolutely 1000% not worth it for us.

I love my regular doc. When I told her the story of what happened she was furious. Since that horrible appointment, my oldest son, myself and now my mom have all been diagnosed. Guess I wasn't making it up after all!

Share on other sites

A Dr. that doesn't order blood tests she doesn't know how to read...AND her own Daughter had it? I wonder what else slips through the cracks with this Dr.?

It sounds like the Dr. that ordered the test considered the variables and that's why they didn't contact you and tell you about it? I hope that was the case..and not just laziness?

How do these Dr.s stay in business? So many people just blindly follow whatever the Dr. says..and if Dr.s are so clueless that way of doing things is downright scary!

This is how bad it is! I stopped by medical records because I'm changing doctors (again) and requested all copies of my lab draws for the past two years. Included in the stack of papers was a copy of the form they sent to our local health dept. as required by State Law. So they notified the health dept. that I had Lyme disease, but didn't notify me in November when this test was drawn.

I've actually scheduled an appointment with an infectious disease specialist, but will be surprised if I have Lyme Disease. (Not that I'm always right.)

I didn't pick up the prescription for antibiotics because I always end up with a yeast infection when I take antibiotics. Hope my autoimmune system doesn't go crazy in the waiting room when I'm sitting there with all those peeps with infectious diseases, lol.

At the end of the day, you have to laugh or cry. I prefer laughter.

0

Share this post

Link to post

Share on other sites

I found out I have Discoid Lupus from picking up biopsy results from my dermatologist. The biopsy was taken over a year ago. This is news to me, the medical assistant called after the biopsy and told me she had good news, the biopsy was good.

It's still "Buyer beware" Now it is "Patient beware." I urge everyone to pick up results from every test you agree to. Don't rely on someone calling you even if they tell you they'll call with abnormal results. I don't mean to bum anybody out, but you have to be your own pilot. There are some dirty dawgs out there with impressive credentials that will steer you down the wrong path, at leas in MHO.

0

Share this post

Link to post

Share on other sites

I found out I have Discoid Lupus from picking up biopsy results from my dermatologist. The biopsy was taken over a year ago. This is news to me, the medical assistant called after the biopsy and told me she had good news, the biopsy was good.

I am so sorry to hear this news, Marilyn. And as always, I am appalled at the lack of good care we have both received during our long ordeal of trying to be DXed and to get well.

If it matters, I was tested repeatedly for Lyme-- because of the many shared symptoms-- and the specialist told me flat out, he was sure I did not have it, but that the two diseases (lyme and celiac disease) mimic each other.

I hope your LYME testing will also be NEGATIVE.

hugs, IH

0

Share this post

Link to post

Share on other sites

Oh, Marilyn, I can't believe they did that to you!. Yes, I am a strong believer in getting copies of EVERYTHING! I don't trust anyone I say it over and over - get copies of ALL your test results. If not your own pilot, you need to at least be in the cockpit and make sure the pilot is awake I hope your treatment has not suffered too badly with this delayed diagnosis. Avoiding the sun is not too bad - I do it all the time

0

Share this post

Link to post

Share on other sites

I learned about getting testing results the hard way. I trusted too much and did not learn about a huge error that was made by my former GI doctor until it was too late. In April 2009, he scoped me and recommended that we continue the course we were on (various GERD and IBS medicines) despite my rapid 90 lbs. weight loss and constant muscle/bone pain and burning GI tract. I was going downhill rapidly but no one found this significant?

In Jan. 2010, I tearfully begged the doctor's Nurse Practitioner to test me for celiac. She told me it could not be "sprue" because my panel (run by another doctor) was NEG and "he went down there last year" and there was "just inflammation". She wanted me to take anti-depressants for "fibromyalgia" (I told her about the horrible pain I was in) and to take methotrexate as suggested by the rheumatologist (he said I might have spondyloarthropy) but I do not!! That was the last time I saw her because she was so rude and dismissive. (BTW, I no longer need any of those drugs as all those symptoms are gone)

I had been seeing this doctor since my initial round of bowel problems back in 1998! Their answer to that back then was round after round of antibiotics---which I dutifully took---but no one ever suggested Probiotics (and I was so naive, ill-informed and trusting back then)

By 2010, testing revealed no detectable good gut bacteria! (and this is why IH is so pushy about PROBIOTICS on here)

When I started to collect lab test results, pathology reports, etc. to bring to my new GI doctor, I saw, to my horror --that the GI doc had never even biopsied me. So how could they have ruled out celiac??? (again, I was ignorant of what is involved in a celiac DX and trusted this "reputable and highly regarded GI doctor"

I wrote to them and asked why they let me suffer with all those symptoms for 12 years and how they could have made such a mistake?

No reply.

0

Share this post

Link to post

Share on other sites

I found out I have Discoid Lupus from picking up biopsy results from my dermatologist. The biopsy was taken over a year ago. This is news to me, the medical assistant called after the biopsy and told me she had good news, the biopsy was good.

It's still "Buyer beware" Now it is "Patient beware." I urge everyone to pick up results from every test you agree to. Don't rely on someone calling you even if they tell you they'll call with abnormal results. I don't mean to bum anybody out, but you have to be your own pilot. There are some dirty dawgs out there with impressive credentials that will steer you down the wrong path, at leas in MHO.

They made a DX and never told you? That's inexcusable!

I wanted to change PCP so I picked up my medical records (which they charged me for). I was shocked at how reports of my visits were described. Quite a work of fiction!

I called the GI's office that did my scope and blood tests in Dec. I was told my blood work shows I don't have Celiac. What if I wasn't so well informed and went off and had a gluten binge?

I've learned one thing through all of this..always get copies of test results!

Share this post

Link to post

Share on other sites

Irish, did you send the letter certified? Your Quack can always claim he did not get it if it's not certified.

There was an episode of Golden Girls where Dorothy wasn't well & every dr. was dismissive. Finally she got a dx of chronic fatique syndrome & she ran into the last dr who she saw at a restaurant. He had told her she was depressed & to get her hair & nails done. Well she reamed him up one side & down the other him right there in the restaurant.! It was a victory (altho ficticious) for all the patients who were ever dismissed or not taken seriously. Sure it's an old tv show but that was a very important lesson (which is not ficticious at all) about quacky Drs & it was filmed in the early 90's. In real life in continues & probably always will.

So sorry for you & what everyone here has been thru with these morons.

Share this post

Link to post

Share on other sites

Irish, did you send the letter certified? Your Quack can always claim he did not get it if it's not certified.

There was an episode of Golden Girls where Dorothy wasn't well & every dr. was dismissive. Finally she got a dx of chronic fatique syndrome & she ran into the last dr who she saw at a restaurant. He had told her she was depressed & to get her hair & nails done. Well she reamed him up one side & down the other him right there in the restaurant.! It was a victory (altho ficticious) for all the patients who were ever dismissed or not taken seriously. Sure it's an old tv show but that was a very important lesson (which is not ficticious at all) about quacky Drs & it was filmed in the early 90's. In real life in continues & probably always will.

So sorry for you & what everyone here has been thru with these morons.

I sent the letter to her (the NP) and a copy to the doctor who owns the practice and to the MD/"holistic" doc I was also seeing at the time who also missed the DX and told me "volunteer work" would be good for me as it would get my mind off the constant pain and my hair loss, etc. I posted that doozy of a story earlier in the thread.

It's okay. They can ignore me. They know what they did.

Even if I were to try and prove negligence, they will only justify it all by saying I tested NEG on blood panels anyway, so they did not need to take further action. It's also a problem of the "set diagnostic Gold standard criteria "BS that is in place for Celiac.

Very interesting, IH. This problem is so beyond my understanding. Just saw my doctor today and he is so knowledgable and aware as I mentioned before. This time my BP didn't go up too badly when he walked into the room!

0

Share this post

Link to post

Share on other sites

Very interesting, IH. This problem is so beyond my understanding. Just saw my doctor today and he is so knowledgable and aware as I mentioned before. This time my BP didn't go up too badly when he walked into the room!

Knock it off, you "Cougar"! hahaha

There are some fresh ones who "get it"--like mine.

He has the challenge of (1) diagnosing people properly (2) undoing the damage his colleagues have done and (3) trying to convince the old guard in his practice that they are missing the damn boat.

Poor guy.

He did not intend to become a celiac specialist, but I keep sending people to him because he is their only hope. And he is compassionate enough to take them all on.

Share on other sites

I wrote to them and asked why they let me suffer with all those symptoms for 12 years and how they could have made such a mistake?

No reply.

They would never respond, as anything they said in a letter to you could be used in court. If it was calm, well written & not abusive (which is probably what you wrote) they threw the letter away. If your anger shone through or you cussed a bit, questioned his medical credentials or called his ethics into question - they put it in your chart with a note about how it shows your mental instability. Sorry but those things do happen.

0

Share this post

Link to post

Share on other sites

They would never respond, as anything they said in a letter to you could be used in court. If it was calm, well written & not abusive (which is probably what you wrote) they threw the letter away. If your anger shone through or you cussed a bit, questioned his medical credentials or called his ethics into question - they put it in your chart with a note about how it shows your mental instability. Sorry but those things do happen.

I knew all that when I wrote the letters, K. I did it for me, mostly. And they were firm, factual and non-inflammatory in tone and context. But I pointed fingers and I had the facts on my side.

I was married to a lawyer once (almost became one myself ) and I knew full well none of them would admit to a damn thing in writing. One did call and leave me a message, but it was non-committal, rehearsed and generic and was probably written as a CYA statement by his lawyer. I have it recorded, but it is so vague, it is useless.

I mostly wrote the letters to give ME some satisfaction and to tell them in effect, "I told you so, you a$$hat". I wasn't making all that up. It wasn't just stress and it wasn't just menopause or fibromyalgia, or grief over my Dad's death or some other BS thing they blew me off with.

It did make me feel better. A wee bit.

In the end, "what goes around, comes around".

I believe in Karma.

Someday, someone they love--or perhaps they, themselves?--will need a doctor to really LISTEN and help them--and they will be the ones feeling the frustration we have.

0

Share this post

Link to post

Share on other sites

Thanks for your previous kind responses, Mushroom and Love. It was kind of a whack on the head to learn that I had other stuff going on, the Lupus is real, that's from a skin biopsy. I still don't think the Lyme's disease blood draw result is a real concern, it just shows antibodies on the panel, and by body furls antibodies at everything.

I have Vanicream 60 sun block in my bathroom and car Mushroom. Just wish I'd known it was so important before. (And howdy, fellow Lupie.)

So to reitterate, pick up your medical records. If you live in a state that the lab is prohibitted by law to release them, ask (or demand) that your doctor write on the lab draw "release records to patient" in your office visit. Same with any test. (Labs are prohibited from releasing results where I live.)

I think part of the problem is that everybody's going electronic. In the old days, the Dr. had a stack of lab results he orderded the day before. His nurse or medical assistant would stick them on his desk. He or She would review them on paper. I don't know where lab results go now, is it to a nurse, medical assistant, Doctor? Anyone that cares?

You have to be the one that cares. That's what I found out by accident and Ihope it can make a difference to somebody else.

0

Share this post

Link to post

Share on other sites

I have a sneaking suspicion that my lab results go straight to the secretary who scans them into my electronic file and any hard copy gets stuck in a big box of "filing" (Or maybe it's the 'round' filel ). Or maybe there IS no hard copy, that they come in electronically into my file, either automatically or placed there by secretary or ?nurse? and maybe the doctor sees them. I got a copy of a consultant's report mailed to me by the consultant, and my doctor hadn't seen it and it wasn't in my electronic file because he had mailed it. I had to show it to my doc

Share this post

Link to post

Share on other sites

I don't even want to ask you this because I'm scared of the answer, but here it is:

Did your doctor refer you to the consultant?

Even if he didn't, that's just plain BS.

On a happy note, I saw a new & improved Derm today. He was well informed about Lupus and Mixed Connective Tissue Disease and Celiac based on the conversation we had. He took another biopsy (deep one) on another site after explaining why and asking for permission. I was so impressed with him., he knew his stuff! He told me not to worry, he'd take care of me, espially after the Rheumy that is across the street from him "works me up".

Link to post

Share on other sites

I spent 25 years(!) listing off symptoms to doctors. Not one of them even paid any attention to what seemed like a crazy list of symptoms that had no apparent connection to each other. I gave up trying to get any of them to listen to me. Then I decided to get a colonoscopy (because they recommend it when a person turns 50), and low and behold ---I have celiac disease. And guess what --YES, there is a long list of symptoms that seem unrelated to each other. And many of my symptoms of the past 25+ years are on that list!

I trust no doctor! They are all idiots in my book.

I can't tell you how many times I was told that "it's all in your head" or "there's nothing wrong with you, everyone lists those same complaints..."

I learn more by paying attention to my own body and reading a lot of information on the Internet and in books, magazines, newspapers, and now (Thank God for you folks here!!!) at the Celiac.com forum.

20 years ago I had chronic diarrhea and no medical insurance. I was on my own! Well I found acidophilus and decided to stop eating bread. That did help my digestive problems and it helped for many years, but I now believe that I have had gluten intolerance and later celiac disease for at least the last 28 years.

Even my gastroenterologist only "thinks" that "maybe" I have celiac disease.

I know for sure that I have celiac disease because the gluten-free diet has changed everything for me, and I have only been really gluten-free for about 35 days.

0

Share this post

Link to post

Share on other sites

While living in Japan I went to the doctor two times because of intense abdominal pain, nausea, cramps, and lots of stomach acid. The first time I went he thought I could have a thyroid problem or some infection so he ran a blood panel and they came up negative. He told me to come back two weeks later to see if my symptoms improved.

I came back just as sick as I had been and now was feeling pain behind my right ribs. He said, "There can't be anything wrong with you since the blood work all came back normal. I'm going to prescribe you some sleeping pills and anti-depressants to help you through the difficult time you must be having."

He ran one blood panel, and pushed my stomach for a minute and decided I must be depressed and unable to sleep. Funny thing is, I told him I'm sleeping MORE than normal because I feel so sick all the time. I got diagnosed with celiac a few months after I yelled at him for not believing me and that I wasn't crazy. Turns out I also had a couple gallstones and constant gallbladder attacks for years, but at least four doctors kept saying I was "too young for those, so we will run tests for something else". Strange that I had every symptom of gallstones but doctors just waved that idea out the door.

Went back to the doctor in Japan after I had my gallbladder removed because I had a heat rash on my surgery scar. He did a full bow in apology for not believing me and doing more tests when he should have. I have since switched doctors, but the amount of time I spent in misery from doctors downplaying my pain and symptoms is more than enough to make anyone sick.

Follow Us

Like us on Facebook

About Us

Celiac.com was founded in 1995 by Scott Adams, author of Cereal Killers, founder and publisher of Journal of Gluten Sensitivity, and founder of The Gluten-Free Mall, who had a single goal for the site: To help as many people as possible with celiac disease get diagnosed and living a happy, healthy gluten-free life!